Castlederg's Liam back in action for another London Marathon to fight Cystic Fibrosis

AT 63 years of age, Liam McHugh is once again lacing up his running shoes to take on another London Marathon.

A tireless fundraiser and advocate for the Cystic Fibrosis Trust, McHugh has dedicated over three decades to raising awareness and funds in the fight against Cystic Fibrosis (CF), a condition that affects more than 10,800 people in the UK.

Since his daughter Rachel was diagnosed with CF in 1992, Liam has been on a relentless mission, covering approximately 120,000 miles and raising an astonishing £387,000.

His efforts have not gone unnoticed - he was awarded the prestigious Pride of Britain award in 2020 for his unwavering commitment.

Liam's advocacy extends beyond marathons. He has campaigned for improved access to life-changing CF treatments, making his voice heard at Stormont and Westminster.

In recent years, major medical advancements have led to the development of drugs like Orkambi and Kaftrio, which have transformed the lives of 90% of those with CF. However, Liam remains focused on the 10% who are still waiting for an effective treatment.

“I have to keep going until Cystic Fibrosis stands for ‘Cure Found,’ ”he said. “I’m fighting for everyone living with this condition, especially the 10% who still don’t have lifesaving drugs.”

He is however optimistic about the arrival of a new drug, Alyftrek. It has been approved for CF patients aged six year and older. It's a once-daily CFTR modulator, a type of medication that helps restore function to the malfunctioning protein that caues CF.

“It has been been approved for the UK but the National Institute for Health and Care Excellence (NICE) and the NHS are reviewing it and it's hoped it wil be available to the public in the summer.We're hoping this new drug will help some of the 10% affected.”

Liam overcome the Covid disruption to the London Marathon in 2020 by doing the official distance 26.2 miles (42.2 km), in and around his native Spamount and Castlederg.

He ran it again the following year near his 60th birthday in October instead of the usual date in April as organised had moved it again because of Covid. It was this run that also marked him reaching the £300,000 mark in terms of funds raised.

After missing London Marathons in 2022 and 2023 due to injury, Liam made a determined comeback in 2024, despite suffering from Haglund’s deformity, a painful condition affecting his heels. Doctors warned that continuing to run could leave him in a wheelchair, but after undergoing 18 months of intensive physiotherapy, Liam decided to take on the challenge once more.

His breakthrough came when he got advice from Co Offaly and now Strabane based athlere, Anne Marie McGlynn on how best to tackle the problem. She was well qualified to help Liam having just won both the Dublin Marathon and the Irish national cross-country championship last year.

“She suffered from the same thing but not as bad as me. She put me in touch with the Posture Doctor in Cookstown for shock wave treatment on my heels and it worked really well.”

Against the odds, he completed the marathon in just under four hours - his slowest time yet but perhaps his most rewarding experience.

“I've always finished under three and a half hours, but at 63 and nearly crippled, I suppose four hours wasn’t bad,” he joked. “This time, I took it all in - the sights, the crowds, the high-fives. It was the most enjoyable marathon I’ve ever run, even though I was in pain after 15 miles.”

Liam’s dedication remains unwavering. While he hasn’t confirmed whether he’ll run this year’s marathon on April 27, his commitment to the cause is stronger than ever.

“People from all over the world have asked me not to forget the 10% who still don’t have treatment. That’s what keeps me going. I decided to do the marathon again was because they inspired by their messages and letters from their hospital beds. They are still suffering from CF and there are no drugs to help them. I won’t stop until we find a cure,” he said.

He added he was still in pain and his knee was giving him trouble as well and was waiting for an appointment at Musgrave Sport Clinic.

"I had surgery on the same knee about ten years ago.It's worse now that it ever was and I have to wear a strap on it because it keeps locking up on me when I do a long run but as I say my pain is only temporary, for people with CF it's permanent.

This year alone, McHugh has already raised over £21,000, with donations still coming in. His impact extends beyond fundraising - his efforts have inspired a record number of people with CF to participate in the marathon, many of whom are benefiting from the drugs he helped fight for.

“People from all over the world have asked me not to forget the 10% who still don’t have treatment. That’s what keeps me going.”

For now, Liam will continue his tireless fundraising efforts in any way he can and with around £13,000 left to go, he is hoping to crash through the £400,000 mark in terms of fundraising.To that end he is once again calling on support for the cause. You can donate through his Liam's fundraiser for Cystic Fibrosis Trust Just Giving page or contact him on his Facebook page Liam Mc Hugh (Cheero) for more details

As for whether he’ll take on the London Marathon in 2026, he’ll make that decision closer to the time - after consulting his doctors and listening to his body - but he is threatening to run on until he is 70!

“I tried cycling but I didn't get the same buzz out of it and after running for the last 33 years, I know it's the thing that makes me happiest. I used to run seven days and 100 miles a week, about four marathons a week when training. Now it's 35-40 miles a week to allow my body time to recover.”

One thing is certain: Liam McHugh is not giving up until Cystic Fibrosis is a thing of the past.